Anything Else you'd like to share: My little boy also has down syndrome and I love him to pieces! I pray to God every day to have him seizure free very soon and too allow the medicine to work positively. I want my happy healthy boy back!

Screenname: 0paige0Childs Name: Eli AaronChilds Birthdate: 08.24.2010Date of IS Diagnosis: 08.26.2010Underlying Cause of IS: small/medium stroke in the left-middle cerebral cortexCurrent Medication: phenobarbitalSeizure Free Period: was told by NICU that his seizures were under control by 08.29.2010, other than that- we are not sure.Anything Else you'd like to share: He is a very calm and happy baby. He has a big sister whom is very fond of him and is quite curious about him, as he is to her when he is awake.

Anything Else you'd like to share: Raegan had her first seizure 7/31 diagnosed 8/4. Started Sabril 8/6 have had several EEG's, Sabril was 90% effective but we needed 100% so we began ACTH 8/13 at 80mil began 60mil this last Monday and started 40mil the next day Tuesday. We will continue the weaning off process of ACTH over the next two weeks. We had another EEG yesterday and it showed NO activity. We are praying we will be done with ACTH and then wean off the Sabril.

Seizure Free Period: She is still having them but at a reduced rate and severity than before.

Anything Else you'd like to share: My precious baby girl is the light of my life! With her having Down Syndrome that reduces her chances of having a full recovery from the IS. But i pray every day that God will heal her. I am hoping to reach out and find any other parents in similar situations to see how they are coping and progressing.

Anything Else you'd like to share: Eric is now catching up with his development. He's already crawling and standing :) Therapists say his cognitive skills are his age... It's amazing. We had the hardest time with ACTH for 6 weeks, but it was worth it. Our baby is the happiest baby now.

I am glad I found this group. I hope our story gives hope to all of you going through it right now.

Seizure Free Period: Still getting seizures but not as frequent or severe as before.

Anything Else you'd like to share: Annaly is behind on her development but she is progressing little by little. She is four months old and is barely learning how to hold her head up. She copes well with the seizures(way better than i do!) We like to call her our little trooper because she went through alot of testing and pokes in the hospital and she did so well through all of it. All of our babies are little troopers. They will get through it. We are hoping the topamax works and that she will soon be seizure free.

Anything else you'd like to say: Hollis has mild Pachagyria that is causing her IS. We are continuously trying medication after medication to control her spasms with no luck so far. They were controlled temporarily while on ACTH treatment, but they came back soon after she was weaned off.